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Lupus, Fatigue, Muscle Weakness
By A. G. Moore
A 2012 study conducted in Australia looked at the relationship between muscle strength and fatigue in women with SLE. Since fatigue is a symptom reported by more than 50 % of patients with SLE, researchers tried to determine if the fatigue was due to reduced muscle strength.
This study was small–45 women, 24 with SLE and 21 who were “healthy”. There were two measures of muscle strength examined: functional and isometric maximal. Functional is basically the amount of use a person gets out of a muscle system–it was this measure that correlated with fatigue among SLE patients.
The researchers who ran this study tried to discover factors that might contribute to muscle weakness in lupus patients. Lack of physical activity was considered to be one cause, but this did not entirely explain the differences in muscle strength between the SLE participants and the “healthy” participants. Levels of Vitamin D were also examined (Vitamin D deficiency has been linked in other studies to muscle weakness). However, there was no significant correlation discerned in this small study between Vitamin D levels and muscle strength.
The authors of this study conclude: fatigue is widely reported by women who have SLE. Muscle weakness among these women correlated to fatigue, even in the absence of disease activity. And, vitamin D levels were not found to be a significant factor in muscle weakness in the small group of SLE patients studied.
What is Lupus?
By A. G. Moore
Autoimmune disease: auto, from the Greek, means self (as in automobile: a self-moving vehicle). An autoimmune reaction, in which the body essentially makes itself sick, can be as simple as a rash induced by contact with poison ivy, or a full-blown case of systemic lupus.
The analogy to a car is helpful here: a car (automobile) operates automatically only in the sense that someone turns it on, turns it off and directs its path. However, from time to time reports appear in the newspapers of cars that are out of control—cars that somehow accelerate on their own or fail to respond to instructions to stop, or turn. These automobiles, instead of being dutiful and useful servants, become dangerous agents. This is sort of what happens in an autoimmune disease.
The immune system exists to protect the body. A complex set of interactions go into operation when the body is under assault. The system includes the ability to surround and consume an alien entity (such as bacteria). The trigger—or ignition, if comparing it to a car—for the immune system to go into action is an external threat. In a healthy individual, when the threat is removed the immune system becomes quiet.
However, when autoimmune disease takes hold, the immune system goes haywire, like a car out of control. It starts attacking things that aren’t foreign because it sees healthy tissue as an enemy. In lupus, the attacking immune cells can go after just about anything—the lungs, heart, blood, brain, etc.
The mystery of why this happens is only vaguely understood. Some of the triggers that set off the autoimmune attack have been identified—Espstein-Barr and UV exposure, for example. But on the whole, the autoimmune syndrome that is at the heart of lupus remains a mystery. Once this mystery is solved, then a cure, or even a way of preventing the disease, may be found.
Right now, medicine can offer people who have lupus only one thing: possible control of their symptoms. In most cases this is achievable, though sometimes at great cost.
Lupus can be very resistant to treatment. Since it is still a mystery and since the remedies for the disease are diverse and variably effective, it makes sense that someone with lupus find the smartest, most skilled physician available to treat their disease. Only a doctor with insight, experience and top-notch training should be enlisted in the war against lupus, an obstinate and potentially fatal autoimmune illness.
Negotiating a planet in which light is the source of life is strategically challenging for someone to whom UV radiation is noxious. However, with information and planning, life away from light can be managed. Photosensitivity, for most, implies an adverse reaction to UV radiation. Artifical sources of light, indirect illumination and UV screens facilitate a life in the shade.
However, none of these accommodations addresses a major obstacle in negotiating a life away from light.
It is likely that I have been UV sensitive all of my life, although this phenomenon has only been quantified in the last twenty years or so. When I was a child my siblings used to taunt me with a chant: “fun in the sun”. Apparently I did not enjoy activities that were carried on for long periods in bright sun shine. As I got older, I sought shade as a natural place of comfort. Pictures of me with my children as infants reveal a woman squinting against the sun under a wide-brimmed hat.
The first time a physician suggested I was reacting to UV was when a dermatologist noted that a rash that had broken out followed like a chart the areas of my skin that had been exposed to the sun. Another dermatologist told me to wear sun screen year-round because of a pattern of discoloration that had become evident on exposed areas.
There came a time when I was diagnosed with systemic lupus. It was not surprising that photosensitivity was one of the manifestations of my disease. A lot of things became clear to me–why I would break into a sweat when I was in stores with bright overhead lighting. Not only would I sweat but my cheeks would redden and my discomfort would grow so that I had to flee from the store, sometimes leaving my as-yet-unpurchased items behind.
Of course, as people who are photosensitive know, reacting to UV is not simply a matter of feeling uncomfortable. It is not even a matter of getting a little rash. UV exposure makes us sick.And that’s the part where public perception comes in. That’s the part other people don’t get.
When I say, “I have to get away from these fluorescent lights,” I don’t mean I might get a little headache. I mean that a disease process will be activated.
Last year I wrote a book about lupus and one of the things that prompted me to write the book was when I read about Hannelore Kohl, the wife of the (ex) German Chancellore, Helmut Kohl. Hannelore Kohl committed suicide. Every news item I read described her death in the same way: she had an allergy to “bright lights” and had been living in seclusion because of this allergy. She was depressed by her situation and so she took her own life.
Photosensitivity is included in the ACR’s list of diagnostic criteria. Estimates for the number of lupus patients who experience photosensitvity vary. Dr. Lenny Tuffanelli writes in Maryland Lupus Foundation newletter, “Thirty to forty percent of lupus patients are truly photosensitive” , though he cautions also that all people with lupus “may be harmed by excessive exposure”
Most of the estimates about occurrence are taken from the ACR, and implicit in these estimates are issues of reporting and interpretation. As with the larger problem of lupus diagnosis and treatment, the physician is dependent upon a patient’s impression, and the physician adds to the mix a clinical filter. It should not surprise anyone that the results of such a process are unreliable. For example – how precise is an estimate which ranges from thirty percent (Dr. Tuffanelli) to seventy-five percent (upper range of ACR estimate)? How can a doctor, or patient make a decision based on such vague numbers?
Dr. Victoria Werth, of the University of Pennsylvania Medical School, explains the process that causes a photosensitive reaction. Dr. Werth and her research team at Penn Medical School have “identified a variant of the human gene for tumor necrosis factor-alpha as a cause of photosensitivity in lupus.” Dr. Werth believes that identifying the gene variant that causes photosensitivity can help doctors to identify people who are likely to get lupus and can also contribute to an understanding of why the disease develops.
Dr. Werth discovered that in a those lupus patients who have one or two copies of the variant gene, exposure to sunlight stimulates the gene and subsequently the skin cells to undergo apoptosis (cell death). The occurrence of cell death is then a trigger for immune system activation.
The photosensitivity of lupus patients ( and of others who have diseases the induce photosensitivity) has a pervasive effect on lifestyle. Blithe pronouncements about the manageability of the condition with the use of sunscreens are ill advised. For one thing, sunscreens can be treacherous. My last experiment with one that I bought in Walgreens caused my face to swell so that I looked as though I was suffering from dropsy. Not only did my face swell, but my whole system was put into overdrive and I was ill for about a week.
One well-intentioned site recommends patch testing a new product. Patch test with extreme caution and maybe even medical supervision. I patch tested my new sunscreen twice, once on the inside of my arm and once on the outside. I waited at least 12 hours between tests and another twenty four before putting the lotion (liberally) on my face. Approximately eighteen hours after the last application I started to scratch. First the chin, then the arm. One side of the arm never reacted and the second only mildly.
Not only can sunscreens be harmful, but they are only partially effective. Sunscreen, long sleeves and a hat – all together are helpful. But this get up doesn’t mean its safe to wander around in full sun on a summer afternoon bathed in UV radiation.
I generally do not expect people to make exceptions for me or put themselves out, whether because of lupus or any other problem I have. However, I think that so many people have an issue with UV radiation (not just those who have lupus) that simple structural modifications can be routinized. Inexpensive filters can be placed over florescent lights, for example. Certainly in a medical setting this should be mandatory.